After reading the article “Terminal anorexia nervosa: three cases and proposed clinical characteristics,” I was grateful to have not had access to the article a year earlier – when I would have personally met criteria. I was holding on to a sliver of hope at the time that I could enter back into a quality of life worth living, though my exhausted mind wanted to allow anorexia nervosa to take its course. With anorexia nervosa having one of the highest mortality rates of any psychiatric disorder, I know all too well the psychache and desire to relieve yourself of the suffering. My heart goes out to the patients and families discussed in the article, and I do not wish to debate or question any of the decisions made in their care. More – I desire to draw attention to the questions we must ask when considering the proposed characteristics and potential harm of utilizing “terminal anorexia” from my experience as a patient and health care professional.

(Notably, I appreciate Dr. G’s willingness to meet with me virtually to discuss my concerns proximal to the article’s original release. Due to the very sensitive nature of this topic, I delayed my written response and reflections. Following completion of this article, I was made aware of public comments from the authors on the topic acknowledging the unintended consequences which I highly respect. This article is not about the authors – it’s about the concept of “terminal anorexia” which has and continues to be circulated necessitating further discussions to be had and perspectives to be shared – especially from those with lived experience.)

After reading the article, I was left with the questions:

Where are the cases where patients meet criteria and, against the odds, improve (like me)? Where are the cases where doctors and families thought patients were a “lost cause” (as many of us who experience eating disorders feel at times), who also improved and reclaimed their lives? Where are the discussions on how eating disorder treatment may be traumatizing and fail patients? Where are discussions on the challenges obtaining funding for proper research on how to improve our understanding and effective approaches to eating disorders? How would we know if the patient indeed received “high quality” care (as I will share below, “high level” does not equate to “high quality”)? Where is the public awareness sharing the scarce amount of training that most medical professionals have on eating disorders?

Two tremendous issues I felt after I read the article from the lens of a patient with an eating disorder myself was reduced hope and an increased sense of being a burden to families and society. Lost hope and sense of being a burden are risk factors for suicide, and patients with anorexia are already at higher risk.

Further, as a health care professional, I know intimately well the deficiencies in education about eating disorders that most clinicians receive in medical training. As an NIDCR/NIH-funded researcher focused on head and neck cancer research, I am well aware of the discussions on the relatively limited funding going to eating disorders. Without substantial research, how will we properly evaluate that patients received “high-quality” care and that current approaches are effective?

As a patient navigating the United States health care system with experience being treated in the highest levels of care for eating disorders, I understand the diverse levels of efficacy and potentially traumatic experiences that occur even in centers that promote themselves as specializing in the care of patients with eating disorders.

To paint the picture from my personal experience as a patient with anorexia nervosa, comments I’ve received from professionals who were supposed to be caring for patients with eating disorders in inpatient settings:

“I don’t know why you all are here. You’re going to go back out and do the same things, anyway” (paraphrased) – thank you “wonderful” art therapist for your pep talk.

It’s not true, but it’s easy to believe when you are stuck in eating disorder thoughts. Her comment heightened my own internal narrative that I would never be able to improve. It was not conducive with a recovery mindset, and it should never have been said.

Another example: shortly after an admission, I met with a dietitian who I expected to be compassionate and understand the challenges that I was open about in regards to food angst. Instead, she made a mockery of my level of anxiety around a food item that I shared with her:

“Can you believe she feels anxious about eating X food?” (exact food item not discussed to reduce comparison by others impacted by eating disorders) the dietitian asked the psychiatrist who had stepped into the doorway to meet with me. Immediately, I felt unsafe and lost trust in the dietitian’s care.

Unfortunately and fortunately, I didn’t stay at that treatment center long. Overnight, my heart rate (HR) dropped to levels that the center was not medically prepared to manage – albeit a common symptom of malnourishment and a symptom they could have screened for before I flew from NC to UT to seek care at what was supposed to be a specialized eating disorder residential treatment center. I feared my own safety and the safety of others who were admitted at the time as this facility was clearly not medically equipped for the acuity of care they promoted that they were providing.

When patients go to a higher level of care, it’s an incredible financial and time investment. At the time of my admission, I was active duty military, and turned away from a hospital that was more equipped to manage my medical symptoms due to my insurance. Not even serving our country can guarantee you access to the care you truly need.

Yet, we blame patients when they don’t get better without asking ourselves how much harm the health care system and approaches to eating disorders may contribute to their ability to recover? Is their home environment optimized for sustainability and safe for them to continue their recovery? If not, what are we prepared to do about it?

Lastly, I will speak on my own experience being malnourished and feeling trapped in my own mind and body. At the time, I could pass all my United States Medical Licensing Examination (USMLE) Step exams and medical school exams while providing excellent care to patients per the feedback I received on my clerkships. However, my sustained academic and clinical capacity did not correlate to my ability to care for myself. I consistently experienced heightened suicidal ideation when malnourished and when consumed by eating disorder thoughts, yet I had the insight to know what to say if I was seeking medical aid in dying (MAID) and that sharing my suicidality would have prevented me from getting the relief I may have opted for if provided the option in my vulnerable mental health state (I’ll admit it knowing many may not). It’s a realistic concern, and how are we going to allow patients to make the decision to choose a life-ending treatment knowing this?

Sure – I am not an eating disorder specialist, but my personal journey with anorexia provides the knowledge and insight into a disorder that many who were in a place to take care of me did not yet have the training to truly help manage. I am an advocate for those who may have lost their voice along the way, as I did, and I hope to be an example for them to lean on as they reclaim their voices, as well.

I am one case that was missing from the terminal anorexia article I read in 2022. More cases like mine who fit the proposed criteria with more favorable outcomes need to be represented when we investigate the pros and cons of considering use of this terminology.

I am amazed at the resilience my mind and body has experienced in the face of anorexia nervosa (though I don’t recommend testing yours). I am grateful for those who never gave up on me – and who kept believing in me until I could believe in me, too.

We need to help patients maintain hope and reduce the blame on them for not getting better while exploring the health care system gaps and contributions that are failing patients. I fully accept and understand that patients need to be active participants in their recovery, and we must assist them by creating safe spaces that are well equipped to manage their medical needs while considering the impacts of their environment on their sustained recovery and how we may help them navigate their unique situations.

We also need to have better oversight of the eating disorder treatment facilities and consider the potential harm of diagnostic terminology used to describe patients’ conditions.

Jillian Rigert is an oral medicine specialist and radiation oncology research fellow.